Monday, December 30, 2013

Day 1,290: 2013 in Review

Years pass; that's what they do. They pass whether we are here or not, whether we have enjoyed them or not, whether or not we suffered. Time passes, people pass, the seasons change, we get older even if we seem like we are staying the same. We work and sleep and eat and talk and laugh and cry and screw and swear and raise kids and do chores and we have these memories that once weren't memories at all, they were just life, take it or leave it.

I really don't want to leave it.

I'm trying, folks, trying my best to stick around, to enjoy all this humanity everywhere, to see my kids grow up, to live out the promise of my life. I could look back on 2013 and take stock of what the last half of the year brought to me: a second cancer diagnosis, the knowledge that every single time I was announced to have "no evidence of disease" that it meant exactly that: no EVIDENCE, not no disease; the amputation of my breast; necrotic flesh being scooped out of the surgery site shortly afterwards; physical therapy; 10 chemo infusions; a D&C and conversations about the possibility of ovarian cancer; accepting a new job based in another state three days before my diagnosis and the conversations that ensued thereafter; my 4 year old son's night terrors and subsequent therapy; my blog blowing up on me not because people suddenly became interested in me but because I had cancer again and everyone was all HOLY SHIT, I wasn't expecting that.

I could see these things, but because I have experienced them I don't feel the need to see them. I look back on 2013 and see other things. I see my kids growing older, I see my seemingly ageless husband loving me the same as he always has, if not more,I see the friends who are not afraid of me and what I represent, I see my family listening and hearing about all the things I have shared, no matter how personal or difficult they are to hear, and just treating me the same. I see the people I would not expect to feel things for me, including men from my high school, college kids, random neighbors, folks I have never met, technicians and doctors, who tear up or look askance at me and I see in their eyes and I read in their words this truth: people care about me and are glad that I'm not dead, even if it seems like there are other things they could have been pondering.

I see life in all its delicious ambiguity and imperfection. 2013 included a long, luxurious summer and a cold, hard winter. It included paddle boarding on a beautiful lake in a remote part of the country and my kids becoming obsessed with certain sports. It included me performing in a comedy show, my hair growing longer, my husband becoming a little more stoic, more like me, more resigned and less angry at the ravages of fate. 2013 brought to us the largest party we've ever hosted at our house and some of the quietest moments we have known, due to fatigue and sickness.

This year has been like any other, but more obvious in its implications. Time passes. We make wishes, resolutions, and promises and though they might seem minor or wild, they are really all the same. We wish that time could stand still, as we hope that our bodies won't age too quickly or get bigger or smaller, we wish for peace and love and romance and friendship and health, which all boils down to the same thing:

We want more time. I have been saying for almost four years that while the rest of my generation is longing for youth, I have been trying for 40. The truth is, though, that that is not enough. I want more time than that; I want to grow old. I want to be old, to look old, to have white hair and wrinkles and a hesitance in my steps. I want to be able to slow down. I want more memories to keep, more seasons, more of everything that is boring and exciting and MORE.

This is what I wish for myself, and what I wish for you: to have more time, and to make of it what you will, so that when time stops, the clock that was your life would be filled with...enough. Happy New Year. I will leave you with a dream, as I remembered it. May we all have many more.

By Katy Jacob

In dreams, we do things that would be impossible
in waking life, like drive when we know we are sleeping.
The world looks the same as the real world;
or, more accurately, it looks like the real world
that someone else lives in—so we’ve been led to believe.

Something is always just a little bit off:
the streets are wider than they are anywhere;
no one is behind you or in front of you;
noise and light are filtered artistically;
the car you’re driving is much too clean.

Still, you are yourself, singing along to the radio.
Rain is pouring so hard on the windshield
that you can’t see, but no one pulls over in dreams.
You notice bus shelters and dogs and skyscrapers
and you slow down, but you are not afraid.

Suddenly, then, the rain turns to snow—
so much snow that it falls with a crash on the windshield,
which cracks from the weight, and the car stops.
All the power goes out, everywhere, all across the world.
Somehow you know this is true.

Everything is still, and there is nothing but silence,
because time has stopped, just like that,
and all the other people have disappeared.
You consider exiting the car, but you know it wouldn’t matter.
There is only one thing left that you must do.

You tilt your head up so that you can see your reflection
in the rearview mirror, and you smile and say out loud, to yourself,
because nothing exists anymore in the world but you,
“This is what it will be like.”
And then you do the second thing that you must do.

You wake yourself up and listen to the rain
pounding mercilessly against the window
of your bedroom which miraculously actually exists
in a real city in a real country in a real world
where everyone dies alone.

Thursday, December 19, 2013

Day 1,279: D&C

(Here I am in the parking garage afterwards, on this swanky Palmer House bench.)

Some people know what has been going on with me for the last ten days, and some people don't. The easiest way to explain it is here. This might be TMI, but I don't think so; so much of what happens with cancer, and with breast cancer especially, falls under the category of TMI for our squeamish society.

The day before my last chemo treatment, I got my period. Normally, that would be cause for celebration; it would mean that this chemo has not thrust me into menopause, at least not now, not yet. But this was a different kind of period than any I've ever had since age 11, and I had some hella heavy periods in my teens. I immediately felt like I had wet my pants. There was a ton of blood--I mean a TON. Fast forward ten days. As of this morning I was still bleeding insanely, with huge clots passing all the time; I could feel them leaving my body. I ruined a pair of pants and some sheets yesterday. This situation has led to me being slightly anemic; not so anemic that I could not do chemotherapy, but anemic enough that if it kept up for the next two weeks, the whole regimen would probably be put off--and I only have two more to go. I was supposed to be done with chemo after infusions on January 2 and 9, so having this happen now seems like a lot of bullshit.

Ah, but isn't everything with this?

So, I had to go in for a D&C today. I have had so many medical procedures in my life that I was not worried about the procedure itself, but I was immensely angry that chemo had led me to this place. I was pretty sure it was chemo jacking up my hormones, but it was hard to say.

Before I go on, I have to tell you about some other things that were going through my mind. Having cancer means having abnormal conversations and concerns. I am not a normal woman with heavy bleeding. I am a woman who should have been fine on two previous occasions, who was told this was probably nothing, and then I found out what should have been nothing was a very aggressive form of cancer. So. In my house, conversations like this take place, because in all honesty stranger things have happened:

K: OK honey I have to say this. What if I'm pregnant, and I'm losing the baby?

G: Um, what? I had a vasectomy, remember? Is there something you're not telling me?

K: Yeah right. I've had so much time, energy, and motivation to step out on you recently. Maybe it reversed, maybe it didn't work. You know what that would mean?

G: I'd have a reason to be pretty pissed off?

K: That and, well, it would mean...that chemo killed the baby.

And then there is this.

In addition to bleeding, I have gained weight on chemo; about 5 or 6 pounds, regardless of how much I work out. I have felt bloated. In the past few days, I have had abdominal pain. All of these are signs of ovarian cancer; having breast cancer, regardless of my BRCA status, puts me at a higher risk for ovarian cancer.

So my gynecologist said he would do an ultrasound with the D&C that was recommended for me, so he could show me that my ovaries were normal.

And today, I had that ultrasound. I was furiously bleeding all over the exam room, to the point where my doctor said "holy shit!" and started to mop up. Then he did the internal ultrasound, which showed...that my ovaries are not normal. I have what three doctors assume to be hemorragic cysts, or blood clots in the ovaries. They are two inch, shadowy masses. They do not look like the circular tumors I have seen (four of them, people) in my breast via ultrasound. The last tumor, the one that marked this recurrence, was kind of shadowy as well as it sat right by my scar tissue. So I did not feel altogether reassured, especially since they are recommending a complete diagnostic ultrasound in 4 to 6 weeks. My gyne tried to convince me it is not ovarian cancer. But how well can that work at this point? I have been told it's not cancer before, and look what happened. Of course, ovarian cancer would be much more likely to kill me, so there's that.

I sat there feeling ambivalent as they prepared to do the D&C. And wow--that hurt like a bitch. At first, two doctors could get nothing through the suction pump. My endometrial lining is actually very thin and there were no clots there, leading them to believe that my uterus is actually fine, but that my hormones are so jacked that the bleeding is unrelated to anything stuck in the uterine lining. A third doctor, the D&C specialist I guess, came in and suctioned the hell out of me, until I was audibly cringing and clutching Gabe's hand, which is rare for me. He got maybe a third of a specimen cup of tissue and blood.

This may sound strange, but boy was that disappointing. I was hoping they would just scrape everything out and I'd be clean and stop bleeding. I was hoping not to see the look on the other doctors' faces when they said, oh ok breast cancer, it's hormone positive I assume? And I said no, it's triple negative. Their eyes involuntarily widened. They were afraid for me and I could see it, no matter how they tried to hide it. And then they suggested I go on progesterone for a few weeks if my oncologist ok'd it, which I said I didn't want to do unless the bleeding was completely out of control. And then they left, and my gyne told me to just lie there for a bit.

We waited. And waited. And finally a nurse came in and told me to get dressed, and we went to talk to the doctor in his office.

He kept telling me they were cysts, that they would go away, that I did not have ovarian cancer. He saw the look on my face. He said, "you have a terrible disease and the chemo is affecting all parts of your body. I'm sorry you have to go through this again. I'm sorry about your kids. You will follow up with this ultrasound and it will be fine. I'll call the oncologist, we'll make a game plan. You just take care of yourself, take it easy."

And I looked at him and just kind of mumbled that I always do take care of myself, but I am tired of this, I am tired of cancer, I just want to be done with it.

We got up to leave. He shook Gabe's hand (he had said a bunch of hilarious things to him in the exam room, including the fact that he shouldn't act like a jerk because I look pretty good and I could easily replace him), and he told him to take care of me, and Gabe said he always did. Then he hugged me with that big, crushing bear hug. He called me sweetie and said I should hang in there. And then he grabbed my face with both of his hands and looked me right in the eye.

And he said "I mean it. Hang in there." He looked at Gabe and said "I love this girl." And then he walked away.

Thursday, December 12, 2013

Day 1,272: Living in the Blink

I've been thinking about the fragility of life lately. Or maybe I mean the absurdity. I've been thinking about it, but I feel unable to say anything about it. So I thought I would say some things that I've said before, when I had more words than I have right now.

In 2006, I wrote this for my daughter when she was nine months old; this was almost exactly 7 years ago. Cancer wasn't even a glimmer in my eye, though realistically, I probably had it already at that point:

First Winter

by Katy Jacob

No one ever told you what lies beneath
the most beautiful days.

In the whole of your life
no one ever told you about the
heavy sharpness of white lace ice,
the glare in your eyes that you will miss after the melt,
the implied noise just before the branches crack,
the danger and perfection all mixed together.

Remember that I will always remember your tiny hand
curling up to a soft white leaf, which cracked and fell at your touch.

If I could, I’d give you this gift,
this day, a postcard you are too young to receive.
I’d vanish into you
so you could see how you smiled.

Almost two years ago, I wrote this for both of my kids. It's about winter. And other things. I had had cancer already at that point; I believed myself to be a 1.5 year "survivor," whatever that means, though it probably wasn't true.

Frozen Lakes, Explained

by Katy Jacob

We are going to walk out onto the lake.
We will not be the first ones.
There are people in that box, because that box is actually a house.
The people are not really small; they are just on the other side.
It is all a matter of perspective.
The house and the trucks weigh much more than you.
You will not fall in, even if you do fall over.
That’s right, I am making you a promise.
The snow is clean, so you can eat it.
The trees are beautiful, so you can try to run to them.
There are deer tracks; birds have walked here.
No, I don’t know why. I don’t know where they were going.
Do you understand what expansion means?
That is what is protecting you; the cold has made this playground.

This is something I had to wait more than thirty years to do.
This: the ice, the trees, the quiet, those men looking across at us,
the reminder of animals, the looks on your faces,
the way you let go and took off running,
the sound of your voices in the cold when you asked to come inside,
the curiosity that led you to ask for an explanation,
the fact that I didn’t want to tell you,
having waited for this, this moment when you no longer believed me
when I told you that some impossible things are actually possible.
You can run now where you might otherwise drown.
Trust me, trust all those who went before you:
those who knew that it would work, and those who didn’t,
but walked across the water anyway. Especially them.

And before I wrote either of those, I wrote this for my grandmother when she died. They say that life goes by in the blink of an eye, and that what's important is how you live in the blink.

For Marthagene, 12/20/19-7/7/06

by Katy Jacob

there are places
where only the eye

can find you--

or the dead--
we interpret


as a moment
akin to a dance

a kin

to the longing
of hands

in the air

in the pause that follows
when grief defines


time dips back
into shadows

and I see you again

standing in towns
small as specs

living in the blink

Sunday, December 8, 2013

Day 1,268: Night Terrors

When I was 9 years old, I had night terrors. Night terrors are a strange beast. You become terrified of going to sleep, but you can't remember anything that happened in the night. You have nightmares but you don't realize it. I was told to keep a "sleep journal" and write about my dreams the moment I woke up, but that was a losing proposition. I couldn't remember anything. I drove the rest of my family nuts--I would scream and cry rather than sleep. My dad often slept in a chair in my room. I hated the thought of being alone in the dark. It wasn't just a problem for me, it was a problem for everyone else in the house. I went to therapy. It didn't work.

Nothing worked until one day, when I watched a movie on TV about a little girl who died from cystic fibrosis. And I screamed about how unfair that was, and how I could have died, how I almost died. And then I slept normally, having admitted to the fear that plagued me in the dark and in my dreams.

I wasn't being dramatic. I actually almost died when I was 9 years old, after having been hit by a car. I needed to articulate that knowledge, and no one could get it out of me. I just needed to work through it, to accept the universality of mortality, at a time when most children believed that death was something that happened to other people, not to their loved ones, and definitely not to them.

Fast forward almost 30 years. My four and a half year old son is having night terrors. His manifest somewhat differently than mine; he sleepwalks at times, for example, which I never did. He will burst into our room, eyes wide open, and begin talking utter nonsense, or screaming, or both. He doesn't make any sense at all. The other day, he burst in and screamed, "MOM! NO!" Then he said, "DADDY! I NEED TO TELL MOM THAT THE OTHER TEAM IS GOING TO KICK A FIELD GOAL!" It might sound funny, but it wasn't. He proceeded to just scream and cry and we asked him what his dream was about and he just shook his head. He wasn't really conscious at all. He couldn't, or wouldn't, sleep until Gabe stayed in his room with him. The next morning, he had no memory of any of it.

On the one hand, I could be concerned about night terrors because of what they could represent. Night terrors are a symptom of epilepsy, which I had from ages 6-8 and 11-17 (I was "cured," then it came back; I had no seizures after age 12 so either the medicine worked completely or I was "cured" much earlier than 17). We have epilepsy on both sides of my family. However--having had the condition myself, I know what to look for, and I have seen no other signs of epilepsy in my son. After all, I had epilepsy at age 9, but my night terrors were completely unrelated.

Gabe and I realized something last week, and it all began to make sense.

My son has night terrors only sporadically. Specifically, he has them on days when I have chemo, or the day immediately thereafter.

We have had him in therapy, to deal with things related to my cancer but also just so he can learn to calm down and not act so insane half the time. But it is hard to get a four year old to talk about death. It is hard to get a 40 year old to talk about it, for that matter. It's even harder to get him to talk about something that isn't tangible--I am not dying right now, I am healthy much of the time, I only take to bed or am too nauseous to be functional for a handful of days a month. True, sometimes I fall asleep in the middle of the day on the weekends, or take to bed when my kids do. But a parent does not have to be obviously ill for her children to understand the thing that parents spend time trying to hide from their children.

When my daughter was my son's age, and I had cancer the first time, she coped by talking about it. She gave little preschool chemo tutorials to her friends. She counted and kept track of my radiation treatments. If we kept anything from her, any information about what was happening, she got upset. She only had trouble sleeping at the beginning, when we didn't know what to say to her and doctors and others encouraged us not to tell her (that was really, really terrible advice) and we would say things like "Daddy and I are going to a meeting together" when we were on the way to meet with the surgeon, and she would cross her arms and glare at us and say "You guys don't even work together." So, I just laid it all out for her, and she coped just fine.

It is different with my son. My cancer is different, and his experience is different. He doesn't remember a time when he had a mom who hadn't had cancer. On the one hand, this is normal. On the other, he knows what it means and what it represents. He knows I could die. And who are we to tell him otherwise? This is the child who says to his father, and not to me, for reasons that seem obvious, "Dad, I wish I didn't ever have to die." He hates it when we, his parents, have birthdays, because he sees it as us getting older and that much closer to death. And didn't Dr. Spock say that children can forgive their parents for everything short of dying? What can we say, what magic can we impart to ease his mind?

There is little we can do. I was nauseous and exhausted and had been lying in bed since 5 pm after chemo, but he just couldn't calm down, my husband's words weren't working, so I stumbled into his room and gave him his stuffed animals and told him all that I could tell him: "You are fine. We are all fine. We are all safe in our house, and you are in your cozy bed with your cozy guys and blankets. Nothing is going to happen to you tonight. Not tonight, not right now. We will all wake up in the morning." And he calmed down, but not entirely, so Gabe slept in his room until he awoke and came back to bed with me, and everything was all right for a few cold, moonlit hours, and it was enough, at least for a time.